Diagnosing Our Young Daughter w/PANDAS

[lhatton]

Since late Summer of 2006, we've been fighting with symptoms we now believe to be related to PANDAS. It's been a long, exhausting, emotional ride, and as I write this we still feel quite lost, and alone. This website was the only Support Group I could find, and sadly it looks pretty empty. Hopefully this thread will attract other parents of PANDAS children, and that they will contribute their experiences.

[My upfront apologies for what I know will be a lengthy thread]

Until last Summer, our daughter had been a fairly healthy child. She developed normally, and for the most part, was really well behaved. Since both my husband and I work, she grew up a 'daycare kid'. We didn't start to receive poor reports on her behavior until she was in her early fours. We chalked it up to difficulties in adjusting to recent changes (we had moved into the area, and switched daycares). The reports received were spread out, and manageable. The reports were of mostly of her being highly stubborn (i.e., she would make a mess on purpose, and refuse to clean it up).

Towards the end of last summer (2006), we would experience another move, and a big change - Kindergarten. At her new school we started receiving frequent reports of poor behavior. She was refusing to listen to the teacher, and was starting to throw objects in the classroom. We couldn't imagine our daughter acting this way, but decided to see her pediatrician, who suggested a strep test. We were all a little surprised when it came back with positive results.

Our pediatrician said she had heard about some children having behavioral problems that were suspected to be associated with strep throat, but that it was still a fairly new condition (PANDAS), and that she didn't know much more than that. We were given an antibiotics prescription and sent home.

After administering the antibiotics, her days at school seemed to improve, but it wouldn't be for long. In a few short weeks, our daughter began showing violent behaviors such as: Throwing and destroying objects, kicking, hitting, spitting, screaming, crying - which would all turn into what we started calling "Grand Mal Meltdowns" that would make her unconsolable. We also noticed that she would become very clingy, and obsessive compulsive. These behaviors resulted in her getting suspended from school, kicked off her school bus, and a handful of days in the PAR (Positive Attitude Room aka: in-school suspension) room. We had to request special permission for our daughter to catch rides to and from daycare on the 'special bus'. We were becoming extremely concerned at this point regarding any labels that were being inadvertantly attached to her, and the safetly of our own jobs (we were having to take off numerous days without any warning).

Our daughter's pediatrician suggested running a full barrage of tests - including blood work, and a full physical. Her bloodwork came back great with one exception - her strep titers (?) levels were extremely high. She was getting confirmed strep throat infections one after another (to date of this thread - she's had six confirmed cases within a year). Medically speaking, our daughter's pediatrican couldn't find anything medically wrong other than the strep infections - she recommended that we see a pediatric neurologist. We thought that this might be a good route because the meltdowns were coming on almost seizure-like. Our daughter would remember everything that happened right up until she started losing control. After her meltdown she would be exhausted, and out of sorts. After completely calming down (a sort of 'resting period'), she would return to her normal happy self.

The neurologist ran 2 EEGs (one 45 minute, and one 24 hour). Both came back with results (around the sleeping part of our daughter's brain) that were indicative of seizures. He then suggested that we do a MRI to confirm the EEG results. We were relieved when those results came back negative of any problems, but the ordeal of the MRI was absolutely the most frightening day of my life as a mother.

They gave our daughter versatum (?) - a medicine that I wouldn't recommend. To see your five year old baby girl higher than a kite is absolutely the worst! She could barely focus on me, and was mumbling almost incoherently about feeling 'different', and telling me that she was seeing me with three eyes. When we were asked to leave so they could hook up the IV, I went to the closest bathroom and bawled. After the MRI, it took our daughter about 45 minutes to come around enough to drink water, and it took her an additional 3 to 4 hours to be able to WALK! Thank God she doesn't remember anything about that day - it was miserable! By this time, we were tired of subjecting our daughter to these tests, and the emotional toll was starting to put strain on me and my husband (thank goodness for the therapy sessions for us - we're hanging in there).

In between all of this mess, our daughter was also referred to pediatric psychologists, a psychiatrist and was going through a child studies evaluation at school. In my personal research of PANDAS, I read somewhere that children with PANDAS are often put through this pattern of specialist, and come out with some psyciatric disorder... and potentially are medicated for something unnecessary (i.e.: ADHD, BiPolar, etc). We stopped the psychologist, but continue to hold onto her psychiatrist (she doesn't like to medicate 'her children', and so we feel confident that she won't hastily run to medication as an answer). The pediatrician also feels more confident about the psychiatrist making the official PANDAS diagnoses.

When our daughter was confirmed to have her sixth case of strep throat back in late March (2007), we were recommended to have her tonsils taken out. I was concerned about putting her through another painful ordeal, especially after reading somewhere online that it's not recommended for PANDAS children to have tonsillectomies.

Our concerns mounting, I emailed Dr. Susan Swedo at the National Institute of Mental Health (NIMH). Dr. Swedo was the doctor that identified PANDAS. I was pleasantly surprised that I received a response, but we didn't learn many new details. She suggested a couple of doctors that might be able to help, but they were significantly out of the area. Perhaps the most important part of Dr. Swedo's response was the answer to our question of "To do a tonsillectomy or not". She suggested that if our daughter needed one for medical reasons (frequent strep throats, etc), then she didn't see a problem with it - just as long as we understood that it was not a treatment for PANDAS. We could only hope that by removing the tonsils, she would get strep infections less, and inadvertantly have no further problems with the PANDAS related behavior.

Where we are today:
Since our daughter's confirmed case of strep back in March, she's been riding a roller coaster of emotions, and has been having many bad days. In fact, yesterday she went into meltdown mode that landed her two days of suspension (she left war wounds on the teacher).

The tonsillectomy is being performed next Thursday, May 24th by a wonderful ENT that actually just removed my tonsils this past January. Our daughter's last day of school will be May 23rd - giving us the summer to see how the tonsillectomy does for reducing her strep throat infections.

The day care she's in now does not have a very good summer program, and so it was a necessary decision to move her to a 'summer camp' program with LOTS of activities to keep her busy. She's been through this program before, but back then she wasn't having these problems. We've discussed our concerns with the summer camp director about her having meltdowns - especially on any field trips, and how we'll handle them.

Last but not least, strep related medical history:
As a child, I had strep quite frequently. Oddly enough, when the doctors suggested taking my tonsils out if I got one more infection, the infections stopped. (I had my tonsils taken out in January 2007 due to sinus/tonsil related issues, and I started getting strep again)

My husband's grandfather (on his mother's side) passed away in his early 20's or 30's from rhuematic fever (I didn't realize that RF was strep related).

To those of you that made it through reading this entire thread - thank you for your patience. I hope parents with PANDAS children read this, and respond with their stories, and any successes.

[peglem]

Wanted you to know that I'm here and will respond later when I have more time....My story is similar to yours, and not yet resolved.

[lhatton]

Thank you for the response! I'll keep an eye out for your next reply.

[peglem]

You have an awful lot here to respond to so I'm gonna try responding in pieces

Since late Summer of 2006, we've been fighting with symptoms we now believe to be related to PANDAS. It's been a long, exhausting, emotional ride, and as I write this we still feel quite lost, and alone. This website was the only Support Group I could find, and sadly it looks pretty empty. Hopefully this thread will attract other parents of PANDAS children, and that they will contribute their experiences.

[My upfront apologies for what I know will be a lengthy thread]

[QUOTE]Until last Summer, our daughter had been a fairly healthy child. She developed normally, and for the most part, was really well behaved. Since both my husband and I work, she grew up a 'daycare kid'. We didn't start to receive poor reports on her behavior until she was in her early fours. We chalked it up to difficulties in adjusting to recent changes (we had moved into the area, and switched daycares). The reports received were spread out, and manageable. The reports were of mostly of her being highly stubborn (i.e., she would make a mess on purpose, and refuse to clean it up).

Towards the end of last summer (2006), we would experience another move, and a big change - Kindergarten. At her new school we started receiving frequent reports of poor behavior. She was refusing to listen to the teacher, and was starting to throw objects in the classroom. We couldn't imagine our daughter acting this way, but decided to see her pediatrician, who suggested a strep test. We were all a little surprised when it came back with positive results.

My experience here was a bit different because my daughter was diagnosed autistic at age 3 and though she was developmentally delayed, she has still lost some skills and functioning. By the way, she's 12 now. All her symptoms at a young age were chalked up to autism (movement disorders were "self stim", constant drooling and mouth breathing were chalked up to poor oral motor skills, OCD was autistic behaviors) or allergies. She had a few episodes where she had trouble walking or seemed to have pain in her joints...no explanation was ever found for those. She was never checked for strep until age 10- because I wanted it checked and had found a new pediatrician with an insurance change who was willing to investigate the "why" behind the autism. Even then, it was because I requested the test, having heard of PANDAS on the autism board of this forum. The Ped was shocked when she tested positive. Her great response to antibiotics was attributed to "she just feels better now." Which does make sense.

Our pediatrician said she had heard about some children having behavioral problems that were suspected to be associated with strep throat, but that it was still a fairly new condition (PANDAS), and that she didn't know much more than that. We were given an antibiotics prescription and sent home.

After administering the antibiotics, her days at school seemed to improve, but it wouldn't be for long. In a few short weeks, our daughter began showing violent behaviors such as: Throwing and destroying objects, kicking, hitting, spitting, screaming, crying - which would all turn into what we started calling "Grand Mal Meltdowns" that would make her unconsolable. We also noticed that she would become very clingy, and obsessive compulsive. These behaviors resulted in her getting suspended from school, kicked off her school bus, and a handful of days in the PAR (Positive Attitude Room aka: in-school suspension) room. We had to request special permission for our daughter to catch rides to and from daycare on the 'special bus'. We were becoming extremely concerned at this point regarding any labels that were being inadvertantly attached to her, and the safetly of our own jobs (we were having to take off numerous days without any warning).

My daughter (non verbal) had progressed to the Grand Mal meltdowns long before she was tested. We also thought it was over once she was treated and were terribly stupid when she encountered huge behavioral problems for several months when school started. Once again, we didn't suspect strep- thought we'd already taken care of it. She had a petite mal meltdown in her pediatrician's office (hit him in the head with a block and kicked him in the groin, out of the clear blue, with no reason behind it). He had done some reading @ PANDAS since our last visit and since she once again tested + (this was @ 6 months since the last time) he began to think it might be a case of PANDAS. But, prevailing wisdom said that while the strep could be cured by antibiotics, the psychiatric symptoms, still had no treatment beyond psych meds. By this time, the rages were so bad and so violent (self abuse as well as aggression) that we fear we will have to remove her from our home.
We got her a risperdal prescription, but her symptoms had already dramatically improved with the antibiotic alone. Still, the risperdal seemed to help. But, soon after the antibiotic was finished, the behaviors came back and she tested + for strep. Since then, it has been constant...improvement on antibiotics, then the strep returns.

continued on next post

[peglem]

Our daughter's pediatrician suggested running a full barrage of tests - including blood work, and a full physical. Her bloodwork came back great with one exception - her strep titers (?) levels were extremely high. She was getting confirmed strep throat infections one after another (to date of this thread - she's had six confirmed cases within a year). Medically speaking, our daughter's pediatrican couldn't find anything medically wrong other than the strep infections - she recommended that we see a pediatric neurologist. We thought that this might be a good route because the meltdowns were coming on almost seizure-like. Our daughter would remember everything that happened right up until she started losing control. After her meltdown she would be exhausted, and out of sorts. After completely calming down (a sort of 'resting period'), she would return to her normal happy self.

We just finished an 8 day video eeg, which showed a lot of spiking, but nothing they could identify as seizure activity. Its harder to know what's going on when your child can't speak and has difficulty communicating. (which was another scape goat for the meltdowns-she's frustrated) Also, her MRI came back completely normal.


The neurologist ran 2 EEGs (one 45 minute, and one 24 hour). Both came back with results (around the sleeping part of our daughter's brain) that were indicative of seizures. He then suggested that we do a MRI to confirm the EEG results. We were relieved when those results came back negative of any problems, but the ordeal of the MRI was absolutely the most frightening day of my life as a mother. [/I][/I]
They gave our daughter versatum (?) - a medicine that I wouldn't recommend. To see your five year old baby girl higher than a kite is absolutely the worst! She could barely focus on me, and was mumbling almost incoherently about feeling 'different', and telling me that she was seeing me with three eyes. When we were asked to leave so they could hook up the IV, I went to the closest bathroom and bawled. After the MRI, it took our daughter about 45 minutes to come around enough to drink water, and it took her an additional 3 to 4 hours to be able to WALK! Thank God she doesn't remember anything about that day - it was miserable! By this time, we were tired of subjecting our daughter to these tests, and the emotional toll was starting to put strain on me and my husband (thank goodness for the therapy sessions for us - we're hanging in there).

In between all of this mess, our daughter was also referred to pediatric psychologists, a psychiatrist and was going through a child studies evaluation at school. In my personal research of PANDAS, I read somewhere that children with PANDAS are often put through this pattern of specialist, and come out with some psyciatric disorder... and potentially are medicated for something unnecessary (i.e.: ADHD, BiPolar, etc). We stopped the psychologist, but continue to hold onto her psychiatrist (she doesn't like to medicate 'her children', and so we feel confident that she won't hastily run to medication as an answer). The pediatrician also feels more confident about the psychiatrist making the official PANDAS diagnoses.

I did resist medicating for a very long time, until it became obvious that she could not remain in our home w/o something to help her. She was getting too big for us to handle the meltdowns. I found a psychiatrist recently who listened to my pleas that she didn't need to be medicated all the time- only when she's melting down and he prescribed a form of risperdal that is disolved and absorbed very quickly through the lining of her mouth-much better! Also, I finally realized that she hates and fears the meltdowns and have changed my approach to "helping her be safe". She tries very hard to cooperate with me restraining her now- still some reflexsive defensive stuff going on, but she's working on getting a grip now and that really helps.


When our daughter was confirmed to have her sixth case of strep throat back in late March (2007), we were recommended to have her tonsils taken out. I was concerned about putting her through another painful ordeal, especially after reading somewhere online that it's not recommended for PANDAS children to have tonsillectomies.

Our concerns mounting, I emailed Dr. Susan Swedo at the National Institute of Mental Health (NIMH). Dr. Swedo was the doctor that identified PANDAS. I was pleasantly surprised that I received a response, but we didn't learn many new details. She suggested a couple of doctors that might be able to help, but they were significantly out of the area. Perhaps the most important part of Dr. Swedo's response was the answer to our question of "To do a tonsillectomy or not". She suggested that if our daughter needed one for medical reasons (frequent strep throats, etc), then she didn't see a problem with it - just as long as we understood that it was not a treatment for PANDAS. We could only hope that by removing the tonsils, she would get strep infections less, and inadvertantly have no further problems with the PANDAS related behavior.

Allie had a tonsillectomy last July...but the strep has not gone away.:( I hope it works better for you- I think though, that my daughter has probably had strep for years and years before it was recognized and treated.


Where we are today:
Since our daughter's confirmed case of strep back in March, she's been riding a roller coaster of emotions, and has been having many bad days. In fact, yesterday she went into meltdown mode that landed her two days of suspension (she left war wounds on the teacher).

Personally, I don't think your daughter should be punished for behaviors that she can't control. (although mine was, until I realized she couldn't control it). Perhaps you can get a behavior plan in place to help the school and your daughter deal with these unwanted behaviors. She wants to be good, but needs heroic assistance.

The tonsillectomy is being performed next Thursday, May 24th by a wonderful ENT that actually just removed my tonsils this past January. Our daughter's last day of school will be May 23rd - giving us the summer to see how the tonsillectomy does for reducing her strep throat infections.


The day care she's in now does not have a very good summer program, and so it was a necessary decision to move her to a 'summer camp' program with LOTS of activities to keep her busy. She's been through this program before, but back then she wasn't having these problems. We've discussed our concerns with the summer camp director about her having meltdowns - especially on any field trips, and how we'll handle them.

Last but not least, strep related medical history:
As a child, I had strep quite frequently. Oddly enough, when the doctors suggested taking my tonsils out if I got one more infection, the infections stopped. (I had my tonsils taken out in January 2007 due to sinus/tonsil related issues, and I started getting strep again)

Maybe you were getting it from your daughter?

My husband's grandfather (on his mother's side) passed away in his early 20's or 30's from rhuematic fever (I didn't realize that RF was strep related).

To those of you that made it through reading this entire thread - thank you for your patience. I hope parents with PANDAS children read this, and respond with their stories, and any successes.[/QUOTE]

I just wanted to add that we've recently gone to an immunologist, who tested her immune system and initially it looked like she was immune deficient...but she responded well to the 2nd test. Also, she's returned to the ENT just recently and he did a ct scan of her sinuses and cultured her throat for lots of bugaboos- says there is no sign of infection. He thinks she's just a carrier. But that doesn't explain why she sometimes tests negative for strep when she's doing well neurologically and tests + when the associated behaviors are there. Right now we are pursuing this w/ a rheumatologist. Ist appt. was this afternoon. I don't thin he's going to be much help though- has never heard of PANDAS and wanted to know if the doctors had observed the behaviors w/ strep or was it just my observation. He also said the OCD, sleep problems and strange motor movements sound just like Rainman to him. He said he'd read up on PANDAS and do what he can...sigh, autism is really more of a description than a dx.

[trubiano]

I was so happy to find your post! I would love to read more about others going through this. Our son was diagnosed this month and we are confused on where to turn. Psychologist? Neurologist? Who can help us with the OCD and behavior issues? Will he ever be able to control his urges? I agree we need more families on here posting, helping one another, maybe giving answers of what helped their child. I look forward to hearing your updates. How did the surgery go last week?

[lhatton]

I'm so sorry all for not writing back sooner! We've been in recovery week for our daughter's tonsillectomy. Things haven't been going quite as smooth with the recovery as we had hoped, but she is hanging in there. We're noticing that she's getting EXTREMELY sassy with us at home, but we're chalking it up to her not feeling good.

Once she's had a chance to recover, and spend a couple days in her new summer camp (slated for Wednesday, June 6th), I'll hop back on and let you know if we see any improvements. I'm always checking my e-mails!

Thanks for your posts...

[savy]

Hi there,
I just read your post - a very familiar story. My now-9 1/2 year old was diagnosed with PANDAS at age 6. His very compassionate pediatric neurologist called it, "the clearest case of PANDAS" he had seen. It took 13 months for symptoms to abate completely. We are now experiencing a recurrence. He has never had OCD-like symptoms; instead, marked vocal and motor tics, and this time around, dizziness making it difficult to stand, and headaches as well. He hasn't been to school in days, and is becoming depressed. His motor tics seem to worsen at bedtime, along with a general propensity toward meltdown ("Oh no, Mom, I can feel it happening again").

I'm wondering several things:
1) How is your daughter? I hope her symptoms have abated.
2) Has anyone else had a child with PANDAS who experienced visual disturbances? The first time around, we thought they were an unusual side effect of one of the medications (none of which worked for us, by the way). But the flashes of light are here again, and my son is not currently using any medication.
And 3) How are people dealing with the school situation for kids with PANDAS? Every year there is strep in his classroom. The school nurse contacts us immediately, but of course, by that time he's already been exposed. If we kept him home each time there was the possibility of contact with strep, he'd be out over half the year. How are other folks resolving this?
If anyone has any questions for me, I'm happy to reply and share information. Thank you, and best wishes for you and your families -

[lhatton]

With thanks to Savy's post, it has reminded me that I haven't been online recently to give everyone an update on Sabrina. To quickly answer Savy's second question, Sabrina hasn't had any visual disturbances - at least not that I'm aware of. At six years old, it's still difficult for her to verbalize everything she's going through and feeling.

Since Sabrina's tonsillectomy last May, she had a busy summer of swimming and field trips at her local day care. Before enrolling her at that day care for their summer programs, I spoke with the Director to make sure she could handle Sabrina and her special needs (as we've begun to call it). The Director had never heard of PANDAS, but was extremely interested and up to the task of helping Sabrina enjoy her summer.

During the summer we noticed that Sabrina's meltdowns were increasing in frequency and intensity. We were put in touch with an Infectious Disease specialist at the local hospital. After running some blood work (strep titers test, and some other tests), he recommended a 6 month course of antibiotics. We were concerned about her body getting used to the antibiotic and then it becoming ineffective down the road. Ultimately, we chose the lesser of two evils - put our sweet girl on antibiotics, or put her on some psychotrophic medicine such as Ritlin - we picked the antibiotics.

The antibiotics began in late July, and we noticed an immediate positive effect on Sabrina's behavior and overall outlook. She was a happier girl, and was working harder at school to be good. She was becoming our "normal" little girl again. Slowly as the days passed, we started noticing that our own anxieties were melting away, and we no longer had to ask her, "did you have to go to the office today".

We kept in close contact with Sabrina's teacher via e-mail. The teachers (more so than the principal and asst. principal) have always been so caring and nurturing for Sabrina and what she's been going through.

Around mid-December strep throat started floating around, and Sabrina's babysitter got a nasty case of it (it took two courses of strong antibiotics to clear it up). We noticed that for about a week to two week time period, Sabrina's moods started getting darker, and that she was having mini-meltdowns again. As soon everyone was well again, Sabrina's moodswings started clearing up, and all was well again. We talked to the doctor about this and he suggested leaving Sabrina on the antibiotics for a little while longer since she seemed to be responding so well to them.

Towards the early half of this year everyone around us started getting sick. The flu, bronchitis and other viruses were running rampid at school, at home, and with everyone in the state in general. Sabrina's moods started to tank again, this time she didn't jump back when everyone got well.

A couple weeks ago, Sabrina was retested (another blood test) to see where her levels are, and to see if the antibiotics have been helping. As of writing this, we're waiting to hear back from the doctor (the lab was having issues getting the results to the doctor - grrr). When we last spoke, he did say that after he gets the results he wants to see Sabrina again - we might up the dosage of the antibiotics. We'll also talk about how much longer we will keep her on them - and will that continue to be the safe alternative to mental health meds.

Also, Sabrina remains on the special needs bus. With her being in first grade, we are worried the kids will start to tease her about it. Right now we're lucky as the bus drops her off before anyone else gets to school, so nobody really knows. Kids are mean, and this is the last thing Sabrina needs to worry about - getting made fun of. We tried to fight to get her back on the 'big girl' bus, but the principal and assistant principal were being jerks about it. Ultimately, I stopped pushing so hard (for now) since I've been told that there are a lot of problem children on the big girl bus that might put Sabrina in a tail spin. Plus, the special needs bus driver and her assistant are AWESOME to Sabrina. They treat her much better than the other bus driver did.

Even though I feel like I don't have the answers in making everything all better, I am always happy to answer any questions.

Best wishes to everyone!

P.S. In late August, we'll be taking Sabrina to Disney for her birthday. She has no idea about it, but we're so excited. We think she'll have a blast since she's totally into Disney.
*fairies

[savy]

I feel so grateful to have logged on and found a reply (any reply!); it meant the world to me, so thank you. Today was a really tough day; my sweet boy so dizzy he wept over and over again, and my reserves were at an end.
You know, our son was the same age as your daughter when he first developed PANDAS, and to my surprise, the other kids were really good about it! I think a lot had to do with the tone set by the teachers. Since you mention Sabrina's teachers have been very caring, I'm hoping the same will be true for her :-) I'm not sure what the response will be now that everyone is 9; I'll keep you posted.
Strength and joy to everyone -

[jessie3686]

To those who are looking for additional resources, I felt that I should share that I found another parent support group for PANDAS which is quite active on Yahoo Groups, the address is: http://health.groups.yahoo.com/group/PANDAS_Support/

[Naominjw]

Wow, reading through this made me think.... My daughter had symptoms of PANDAS but it wasn't. What's the connection? Seems like it always comes back to the body's inflammatory and immune responses. Same with gluten, allergies, fribromyalgia, chronic fatigue, autism... and on and on.

Maybe some day all the doctors will get it through their collective brains that it's not "mental" but real, biological problems our children are having.

Oh... and along those lines, you might also get some ideas from www.ItsNotMental.com -- look for the list of links and resources... (I think it links to stuff specifically about PANDAS as well).

It seems like so many of us have to "reinvent the wheel" with each child.

-"Naomi"

[lhatton]

Hello all! Again, my deepest apologies for being horrible about not keeping up. It seems that all of the activity regarding PANDAS and parents dealing with that is on another forum: http://www.latitudes.org/forums/index.php?showforum=17

DD is not doing well again. Her 9 month course of antibiotics did great, and then we had an additional 5 month reprieve before things went South. Her meltdowns are back, and we're starting up the slew of doctors to try and figure this thing out. The course of antibiotics have started back up again, but much to our frustration, it's not working now. Her ASO/Titers levels have come down, but are still above where they should be.

We feel like we're back to square one and are feeling frustrated and down. We're not giving up, but it's hard to motivate yourself let alone the doctors.

Feel free to e-mail me if you want to catch up. Thanks!

[smokingun35]

My heart goes out to you and your family... I have 2 boys who both had A LOT of strep when they were young. The oldest developed severe OCD at 11 and after reviewing his medical history one of the many Doc's said PANDAS.. We did a long term maintenance dose of antibiotics and stayed Strep free for 6-months but couldn't take them forever however he still had OCD issues during the 6-month treatment regiment. Still has severe OCD now at 18.. My now 13 yr old had Strep A LOT as well and exhibits some very mild OCD issues. His tonsils were removed at 6 yrs old due to constant infection... I'm not really sure they know exactly how to ID Pandas or exactly what to do when they ID it.. One hospital offered some type of procedure that slowly removed my sons blood to be filtered of some type of antibody and then cycled back in. With the side effects and no guarantee it would do anything positive we elected not to do it...

I wish you good luck in your daughters treatments and your search for more answers.